NeuroTalk Support Groups - Is there a sensation that goes with the muscle failure part of MG?

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Is there a sensation that goes with the muscle failure part of MG?

Hi,

I'm new here.

I'm wondering from MG patients if you experience physical sensations like aches or lactic acid when you have problems with, e.g. raising your hands above your head. I've read that it there is no pain or sensation but want to find out from people first hand.

A summary of my situation:
-tested positive and negative for MG with AChR antibody
-negative SFEMG.
-ocular problems including cranial nerve palsies, double vision in the past, blurriness, sluggish pupils, rarely fixed pupils, mild ptosis.
-a host of other severe g-i and dysautonomia problems including POTS, orthostatic hypotension, Central Apnea and breathing problems,
-numbness/tingling in limbs
-blood pooling in limbs
-depleted fatigue
... and more!

Basically, I had symptoms I was ignoring, had a cancer surgery, and instantly couldn't be upright or walk around. Did IVIG and am on a lot of meds.

One neuro says definitely not MG because of negative SFEMG; the neuro who sees me more says MG but that I have another autoimmune condition as well.

So I get a sort of premature muscle weakness or "failure" but I get sensations with them- aches and sometimes cramping and sometimes more conventional lactic acid feeling. I know these things are very hard to describe but I'd appreciate if anyone can relay their experiences along these lines and what it feels like.

Also, wrt breathing, I do have central apnea and often feel sort of too tired to breathe where I don't inhale. But I don't think I would ever fail the blow in a tube test from the pulmonologist.

Thank you.

Thank you for this question.. 2 things I first think of is spaghetti. To explain how legs feel when worse I have said they feel like spaghetti. I have clear memory of this on a walking course during an early try at rehab. At first it was such a small distance before spaghetti hit. The next one is wet towels. This is about feeling in body I have even now when Mestinon down in he morning and I pull or drag my body to my chair having taken Mestinon at bedside. In 30 minutes or an hour at most there is improvement. Thank Heaven for Mestinon. Sculptor44

Thanks for the reply and for the descriptions. One of the things I find so difficult is that the vocabulary is inadequate. e.g. "numbness" and "tingling" for neuropathy is so limited because since my stuff has started, I've experienced sensations of numbness and tingling unlike anything else before in my life. So I appreciate the spaghetti and wet towels descriptions to express your point.